my husband has liver Cirrhosis

[Concep]

HI My husband found out 5 years ago he has hep C and advanced liver Cirrhosis. Two years ago he was put in the hospital for bleeding from his esophagus and is still recieaving bandings for it. He is on Propronolol. He also has gotten type 2 dabetes, Hes taking (Glyburide) and swelling in his belly legs & feet which his on (Furosemide) for that. He also takes Lactulose (sometimes). He is also now suffering from Gallstones which they can not takeout due to his illness. OH he also has low blood platelets of 45 which has been low for years now. Hes illness is at the point now that they are trying to get him higher on the transplaint list. He has lost tons of weight. His 6ft 1 inc and weights 150 pounds. He also was told not to work anymore and hasn`t in 7 months now. He can not handle much activity. His 50 years old. and YES he has Drank beer for years!!!! But stop 5 years ago as soon as we found out he was sick. He has gotten hep C when he was an older teenager.

OK my question. How long can my husband go on like this? Please be direct. We have small children and I really need help. I have asked the Doctor but didn`t get an answer. I need the truth.
Thankyou for your time.  
Yours truly, Concep

[cuteus]

there are some members here that have gone through ESLD, and can be around later on or during the week to give you their personal experience with this illness. weekends are kind of slow in the forum, so be patient and check back later. If you need to add to your question, just hit the post comment button and ask within your existing one.  You don't need to post a new question every time. That frees the other threads for new questions by other members. This forum only allows for 6 to 8 new questions daily, but allows for many comments within. It is something we learn the hard  way, since Med Help doesn't explain it.
Your story is similar to some I have read here by some members, so they might be able to offer some insight. Check back often.
best to you

[Concep]

Sorry I only posted once do not understand why it posted more then that!  Concep   Sorry about it again. No need to respond to this.  :-)

[layla]

The reason it most likely posted twice is after you hit post, it takes a bit to actually post so people end up hitting post more than once. I did the exact same thing. It happens. LL

[Concep]

I read this post again and you stated    "there are members that gone through  ESLD"  Can I ask what that means? Thankyou

[layla]

ESLD = end stage liver disease. I'm sure you will see more come Monday. LL

[mikesimon]

I was in ESLD and was eventually transplanted in June of 2000. I had a major esophageal bleed in January of 1995 which was treated with schlerosing injections. I think the banding is a more appropriate treatment for this problem and I am glad this is how they treated your husband. As to how long he can go on that is a very difficult question to answer. I wouldn't have been transplanted in 2000 had it not been for a routine scan which showed what they thought was a malignant lesion on my liver. The low platelet count isn't unusual with your husband's condition. In all likelihood his bone marrow is producing sufficient platelets but with liver disease they are often sequestered in the spleen. Should he be successfully transplanted that condition will resolve immediately when they perfuse the new liver(initiate blood flow to the transplanted liver). Mine spleen (which was huge) deflated like a ballon losing air - I was told this by the surgeon. The fluid retention in the ankles and abdomen(ascites is the name for the stomach fluid and edema is the ankle swelling) is also typical of liver disease. Diabetes is also more prevalent in people with hepatitis. I too had gallstones but during transplantation they remove the gallbladder so that will no longer a problem should he get a transplant. Has he been offered treatment? I know that often doctors will say that a patient with advanced liver disease is not a candidate for interferon and ribavirin (these drugs are the main line therapy for hepatitis). I was told this prior to my surgery and in retrospect I question the advice I was given. At that time it was believed that cirrhosis was a contraindication to treatment. That has proved to be incorrect as many patients here can attest to. His low platelet count would have to be monitored if he were to try treatment but during my own treatment my platelet count went down to 24,000 and I was okay. I treated after transplantation and that is another reason why I'd explore treatment now. The virus universally recurs after transplantation so the underlying disease that necessitates transplanttion is still an issue post transplant. The impact of the virus on the new liver can not be determined pre-tranplant and despite articles which say that the life expectancy of hepatitis patients is the same as patients transplanted for other diseases I don't buy it. I think it's not just life but the quality of life which should be considered. I would push to see if treatment for his disease might be an option. If this approach is not an option I think all he can do is watch his diet to minimize gallbladder pain and control his glucose levels as best he can. I doubt anyone can say how long he can go on but it can be a very long time. If it were  me I would really try to get treatment now. I just don't see the down side of trying to get rid of the virus or at least to slow the progression and/or reverse some of the liver damage. What is there to lose at this point? I wish you good luck. Don't give up no matter how bad it looks. There is always hope. Mike

[Concep]

thankyou for everyones kind words. I am trying very hard to stay strong. but it isn`t easy. I am left with so much to hold and so much to see. Its very hard on me. I am prepared of the fact that my husband most likely will not be with us long. It is a stain on the children to know this and see this. I am trying my best to keep smiling when around them. But when alone I do cry often with angry feelings. I even work the night shift full time to help with money and I guess to try and flee some troubles. Wrong of me I know. But my inner self is losing I guess. Sorry for venting.

May I ask Mike how old he was when he gotten his transplaint? And did he have the same problems as my husband? Also I am SO HAPPY FOR YOU!!!!!        :-D    That is wonderful news.....

[Concep]

I`m sorry to bother again. but with my kids here its hard to get my thoughts together.  :-/  Mike you asked if my husband is getting treatment.   The only thing the Doctors say is he needs a liver transplaint. The only treatment he gets is the meds that he is on. They also found cloudy spots on his liver that he gets a catscan every six months to  monitor this. This has been for two years also we`ll. He is a mess.

[bystander2002]

Concep, he has to just do the best he can. Noone can tell you how long he can go on like this. It realy just depends how well he follows directions. (taking all his meds like he should, going to the hosp when he has to). I've been in the hosp alot this year. things happen.
Where is he listed? I'm on the list in Calif. so far its a long wait here.
They track your conditon by a meld score. everytime I have a bleed my score goes up (bili), few weeks later it comes back down a few points (bili), so again I wait.

[bystander2002]

ps- they do everything by scores. (If his score is too high, noone is going to consider giving him the tx (interferon/riba) that the people on this board talk about, because with a high score it could kill him)
do you know his score? (ask his hepatologist)

[mikesimon]

I was 51 years old at the time. The treatment I was referring to is pegylated interferon and ribavirin. I have heard the things that bystander said about the risks of treatment. I only know that centers have used these drugs with patients with decompensated cirrhosis who were listed for transplant. Some centers used low doses and in one study regular interferon was used because they were worried about the side effects interferring with the transplant surgery and thus didn't want to use pegylated interferon(pegylation makes the interferon longer lasting and requires only 1 shot per week whereas regular interferon is injected 3 times per week). At least you can ask about the idea. My experience was that generally once you're listed all treatment options are disregarded except the sustaining ones like TIPS or ascites drains and the like. Good luck. Mike

[bystander2002]

Some of the rules have changed I guess (since you got a tp)
Alot of people listed are on tx, but only if there meld is low enough

[mikesimon]

This is a portion of an article found at:http://www.medreviews.com/pdfs/articles/RIGD_4Suppl1_S31.pdf. This is a 2004 article and suggests that many pre-transplant patients may benefit from treatment though some are too sick to tolerate the tx. Decompensation with a meld score equal or less than 18 does not a priori not eclude patients but close monitoring is a must. It's just something that should be considered.

"It is generally believed that patients
with chronic hepatitis C on the wait-
ing list may be too sick to be treated
with the combination of interferon
plus ribavirin. However, examination
of MELD (Model for End-Stage Liver
Disease) scores indicates that 93%
of HCV patients have MELD scores
≤18, which corresponds to a Child-
Turcotte-Pugh (CTP) score of ≤7, or
bilirubin 2.5 mg/dL, INR 1.5, and
creatinine 1.5 mg/dL. In fact, 62% of
patients with hepatitis C on the US
waiting list have MELD scores ≤10,
and 31% have MELD scores between
11 and 18. Thus, contrary to popular
belief, it is very possible that the vast
majority of patients with chronic
hepatitis C on the waiting list for liver
transplantation in the United States
might tolerate and benefit from
antiviral therapy."

Basically it states that in patients with a MELD score less than or equal to 18 treatment should be strongly considered. With a MELD score between 18 and 25 it tx should possibly be considered and with a MELD score >25 avoid treatment. My point was and is that treatment should be considered in most patients. It may not be appropriate but neither should it be dismissed in cirrhotic patients without a thorough investigation. Mike

Mike

[Concep]

Hi And thankyou for all your help. My husband goes to Mount Sinai hospital in New York c
City. I am not sure what everyone is talking about when they say, "if his MELD is to low or high." I am a very smart women and know lost of terms about this illness. But I am thinking I might be in the wrong place. ???? I was told by his Doctors that the only thing that will make him better is with a transplant. That he`s to advanced for treatments. That is his only treatment!!!. And its only 75% of him coming out of it alive. The treatments all of you are talking about;;;;  I was told was only for people who have hep C but haven`t reached Cirrhosis. Am I in the wrong place for answers? If so I am very sorry. I guess I am so overwhelmed with all this that I am looking wherever I can for some kind of answer.
Thankyou Concep

[Concep]

Thankyou for the info Mike. It was sad to read because I new my husband is very sick. There really isn`t much hope for him. But still it was good to read cause now I know for sure. AND understand more why he`s not getting any treatments. Again thankyou for your help along with everyone else.   :-)
Sincerely, Concep

[bystander2002]

Hi Concep
When a persons on the tp list, there given a meld score.
(If your husband is on the list at Sinai, Sinai will use a meld score to decide when to give him a liver tp.)
So ask the doctor what his meld score is.
(they should be telling you that anyway)

meld scores go all the way to 40. (40 is very sick)

a person can usally still do tx (to try to kill the hep c) IF there meld score is less than 25

Thats what I meant when I told you that he could do tx if his score was LOW ENOUGH

If his score is over 18, theyll try to tx him for up to 3 mths. (while he waits for a liver tp.)

If his meld score is over 25, nobody will consider tx. People with meld scores over 25 just wait for a liver tp